Being unable to contribute or feeling like a burden when your arthritis flares up is one thing. Working for the NHS and being laid up sick when there’s a global pandemic going on, is heartbreaking.

The burden of arthritis

I’m often told I worry too much about the impact of my health on others. But I think it’s only right to be considerate of others. At times of disability, it’s something that’s never far from my mind.

As talked about a lot on this blog, I have a young family. I could afford to be selfish with my health a few years back. If I was ill, oh well, I’ll spend a few days in bed to recover. I can’t afford to do that now as others depend on me.

This results in much longer periods of recovery. More days when I’m frankly miserable and irritable from pain. And inevitably, more pressure on relationships. It’s not fair but it’s the reality of living with arthritis. One minute everything is ticking along nicely, the next you can’t pull your weight. Can’t contribute. Can’t be the father, husband or role model that you want to be.

Declining health

My period of poor health has been persisting for over a year now and is well documented on this website. However, things took a real turn for the worst in October 2019.

After a nasty period of multiple infections, my arthritis appears to have been triggered on a different level. I seem to be having a much far reaching immune response with my asthma, fatigue and rashes causes problems alongside rising pain levels.

By February 2020, I was signed off work. By the start of March, I was ‘shielded’ and in isolation.

Read more…

Isolation is one thing, but medical isolation is terrifying

Facebook Twitter Thursday 19th March, a day that will long live with me. I was walking my dog on a grey, chilly morning. Still carrying the limp on my right leg from the pain which had kept me off work the last four weeks; I received a phone call. It was my rheumatology nurse and […]

The guilt is almost as bad as the pain

My wife and I are both proud to work for the NHS. She is an Auxiliary Nurse and I an IT Manager. I moved into the NHS after a long career history in providing IT in education because I wanted to give something back.

My last big flare was in my 20’s, my chosen career path was influenced by my doctors from a young age and it felt like the right thing to do. I absolutely loved my first three years in the job. I felt like I had left my mark, improved things, built a well-oiled machine. I’ve always enjoyed a project and specialised in fixing broken processes or demoralised teams over the years. I was proud of my work. Then I started to become unwell.

Thankfully, I had learned from my mistakes in the past and been open with my employers about my health. So at least when this flare hit, it wasn’t such a surprise to them. It still, however, tears me apart.

Most likely from previous experiences where employers had been less than supportive. Perhaps due to those memories of spending weeks on end in the children’s ward and missing out on what my siblings were up to. Either way, I don’t handle being out of work well. I stress, fear for my job, worry about what’s being done in my absence. Am I needed anymore? Do they remember the value I bring? Will I be replaced again, like I was on school and university sports teams every time I had a flare?

These are all deep-rooted issues that I have held since my time at school. That fear of missing out. The fear of being replaced due to the unreliability that comes with arthritis. The longer I’m off work, the more my mental health suffers. Not just because of the pain and lack of sleep – but the worry and guilt over my job too. I hate that my arthritis causes this roadblock in my career that can come out of nowhere at any moment.

An NHS (un)Hero

I haven’t participated in the ‘Clap for Heroes’ campaign that’s going on here in the UK every Thursday night at 8pm yet. Not because I’m ungrateful, goodness knows it’s the opposite of that. But because I feel sick to my stomach with guilt.

I have always been an ‘old-school’ style leader. I like to be first in the office, the last to leave. Tackle issues head on and when there’s a crisis, roll my sleeves up and dig in. To be so unwell at this time is as crippling as the disease itself.

Witnessing my wife coming home broken after 12.5hrs-plus shifts on a ward. Marked from wearing additional PPE all day and exhausted. Putting her life in danger to help others. I’m so proud of her but that should also be me. Ok, I’m not on the front line saving people’s lives but I run a support team that facilitates those activities. To not be involved arranging it all, supporting those absolute heroes, breaks my heart.

I feel like a burden on the NHS and on my family. When my flare subsides – and I keep telling myself it will – I just hope I can make up for the weeks I wasn’t contributing. The weeks when our health service needed people like me the most.

How do you feel when your arthritis stops you doing the things you love? How do you cope with long periods of absence from work? Let us know in the comments below.

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Arthritis and Psoriasis Patient Advocate, Writer And Consultant. Owner Of The Pain Company.

I share my story of Juvenile Idiopathic Arthritis to raise awareness and specialise in pain, parenting (with disability) and the mental health impact of living with chronic illness. I write and campaign for leading charities and organisations. In addition, I provide patient experience consultancy for both charities and global healthcare companies.

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